DROWNING

drowning

The Imperfect Caregiver is here to be a lifeline for you. I know how hard it is every day, how alone you feel, and how you wish that someone would truly understand.

You are amazing even on the days you feel as if you failed. When things change moment by moment you can’t be expected to know all the answers or to get it right every time. Sometimes anger is the only way to get through to a muddled brain. Cry when you must, laugh when you can, and know you are not alone.

 

 

Caring for an Elder with Dementia: Top 3 Negatives Made Positive

Guest blogger, Derek Hobson, shares how the difficulties that caregivers encounter can help us grow.  Welcome Derek.

Caring for an Elder with Dementia: Top 3 Negatives Made Positive
By: Derek Hobson

Becoming a family caregiver wasn’t easy and there were times where I downright loathed all the responsibilities. But when my grandmother passed away and my duties were lifted, there was this… elation that occurred. I don’t want it to sound like I was thankful that she passed, because certainly the first few weeks were dreadful, but I didn’t want to feel guilty for feeling relieved that she had found peace. Part of what made me feel less guilty was the fact that I had contributed in such a big way, but more than that, I felt less guilt because caring for my grandmother made me capable of handling so much more.
At the time, of course, many of the tasks were unbearable (which I’ll get to in the list), but once they were completed for the final time, I saw how my grandmother had helped me grow. Things that I hated doing, made me more prepared for future situations. It’s almost like – no, it absolutely is like yin and yang. Two supposedly opposite sensations, turned out to be complementary. By struggling to take care of my grandmother, I found the positives in every negative task. Admittedly, that not make a ton of sense without context, so here are my top 3 negatives made positive.
1. Sleeping in Front of the Door
My grandmother had dementia and even though we wheeled her around the house, she was not confined to the wheelchair. While it wasn’t often, a few times she would sometimes stumble out of bed and walk around the house in the night. It could’ve been much worse, I mean, I’ve heard of stories of seniors leaving the house at night and wandering around the neighborhood. While this never happened to my family, my grandfather would not hear of it; his precaution was to rotate who would sleep in front of the door to make sure she didn’t wander off.
This wasn’t simply uncomfortable, it was unnecessary! I made multiple suggestions for how we could seal the door, set up a blockade, or rig a bell, but my mother reminded me it wasn’t simply making my grandmother comfortable, but my grandfather as well. So, I begrudgingly slept in front of her door on more than a few occasions.
At the time, I never would’ve thought this would evolve into a positive thing, but it has. I don’t know how many people have researched power-napping. The idea being that if you nap for 15 minutes, you’ll feel as refreshed as if you slept for two hours (or 8 hours in some cases). Well, I could NEVER power-nap. I never knew how long to set my alarm for because I needed some time to fall asleep, but then, if I set my alarm for 20 minutes, I would be thinking of how limited my time is, I’d be counting it down rather than focusing on getting to sleep; it was dreadful!
Now though? After sleeping in front of my grandmother’s door, I can sleep practically anywhere. It may sound silly, but it’s a great thing. If I had a long night and have a big presentation in the morning, I nap for 15 minutes in my car, get up and do it. If I’m exhausted after the gym, but it’s still early in the evening, then I’ll nap for 15 minutes, and head out. I can sleep in my car, on a plane, the stairs – I haven’t tried it, but I’m sure I could. I am definitely better for it.
2. Communication
Eventually, my grandmother’s dementia became so bad that she couldn’t form sentences anymore. However, when it hadn’t progressed that far, she would talk to me, tell me stories, and ask me questions… and then repeat those questions and those stories. The repetitiveness made me so frustrated – especially when I thought about what I’d rather be doing.
Now, this negative didn’t happen overnight, but after several months, I realized what a unique blessing this could be. I’d often been told that I wasn’t a good listener… well, actually, if I’m being honest, I was told, “you don’t respect people when they talk to you,” which seemed harsh at the time. However, as time went on, I realized what that meant; the very thing, I said above, that I grew frustrated when I thought about what I’d rather be doing.
When I stopped thinking of where I’d rather be or who I’d rather be with, I started listening and was given the gift of communication. When my grandmother repeated questions to me, I didn’t always answer with clarity or with specifics. I would answer robotically or with generic answers. Later though, I started actively listening and really empathized with my grandmother. There was a stark difference between when I would just answer monotonously and when I actually started responding.
Since then, I’ve noticed in my personal life that I butt heads with people less often and when I do it’s resolved with concise communication.
3. The Stuff You Don’t Want To Do
I never used to talk about this stuff openly, but it’s something I’m sure many family caregivers experience. The stuff you don’t want to do… specifically dressing, bathing and any sort of clean-up that needs to happen.
My grandfather was a saint and tried to take all this on by himself, but even he needed a break and of course, that meant I was runner-up.
I’m not going to lie to you and say that I enjoyed any of this stuff… looking back, I’m actually surprised I managed at all. But without going into the details, I have since learned that I can handle just about anything. If it’s gross, sticky, smelly – doesn’t matter!
I’m still a young guy (relatively), but when my friends asked me to look after their kid for a day, I changed diapers with the best of them. I’m sure there are people who are pretty squeamish, but with no previous experience with babies, I could change diapers and clean spills without any uneasiness. Pretty much anything others don’t want to do, I do without a second thought.
Again, these aren’t things I relished at the time, but they’ve had a positive impact on my everyday life. Being a caregiver is not easy by any stretch of the imagination and it’s why I’m thankful that today I can work with a handful of people who actively lessen the load of family caregivers, but the rewards are manifold and actionable.

Derek Hobson, BA, is the editor for ConciergeCareAdvisors.com, a senior care referral agency. He developed a passion for elder care when he became the primary caregiver for his grandmother. Since then, he has sought to inspire fellow caregivers as “there is no success without hardship.”

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Good Morning Caregivers – If I Tell You I Need You

If I tell you I need you

Somewhere a caregiver needs you. They may not say it out loud but they are communicating their need. It could be in their absence from all the activities they used to be involved with or by the phone calls, text messages or tweets that no longer arrive in your inbox.  Perhaps the last time you saw her or him in the grocery store there was a brief moment when he or she appeared about to cry.

Maybe you asked what you could do to help and were told everything is okay but, somewhere inside, you knew something was not as it should be.

It’s not that caregivers don’t or want your help, it’s that they don’t know what to ask for.

How do you request a good night’s sleep or a few moments to collect your thoughts? How do you tell friends who are so busy with their own families that you are lonely and wish they would stop by for a visit now and then?

How do ask someone to keep you from falling when every moment of your time is spent holding on for dear life to another?

Somewhere a caregiver is trying hard never having to depend on anyone, to never show any weakness.

If you know a caregiver, please don’t ask if he needs help. Know that he does and do whatever you can to let him know he is not alone.

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The Colors of Caregiving

50-Shades-of-Caregiving-1

Colorful is not the way one would typically describe the life of a caregiver but once my father-in-law, Rodger, came to live with us my days began to revolve around the colors of his life.

Outwardly he appeared to be a drab little wren of a man. All his clothing was either brown or grey, the monotony broken only by one of the muted plaid shirts he saved to wear for an appointment with one of his many doctors. His lined, expressionless face would have been a blank canvas if not for deep brown eyes topped by grey eyebrows so overgrown they rivaled those of the late Andy Rooney. When he spoke there were no colorful sayings to add interest. ‘Just the facts, Ma’am.’ Everything about him seemed designed to blend into the background. At the time I didn’t think to question why he was so determined not to be seen or what he might be doing when he thought I wasn’t looking.

Every day started and ended with a rainbow of colored pills, red, yellow, white, green, blue, pink. Some were taken once a day, others two or three times a day, to treat or control his mental illness, Parkinson’s disease, heart disease, Dysphagia, and various infections that seemed to pop up as often as weeds in summer. In between doses, billowing clouds of vapor from breathing treatments to ease his C.O.P.D. wafted out of his room. He counted out is various medications and filled his pill box weekly and he religiously filled out a mail order form when they began to run low. He knew when it was time for each pill and never failed to take them on time. Or so it seemed.

I should have known what he was doing when the symptoms first appeared but I was still too green to know how devious he could be. Even his doctors were fooled until they day his mind shattered into shards of throbbing suspicion. As I write this I try to imagine what a psychotic break looks like. I picture it as a swirling mass of colors so bright they burn his soul leaving him decimated and his caregiver shrouded in deep, purple guilt.

Eventually I discovered that the anger and resentment I sometimes felt when dealing with the daily stress of life as a caregiver could hide in a fog of grey fatigue or the flashing colors of an aura signifying the onset of a migraine headache causing me to scramble to find what I could to minimize the pain.

Fortunately, not all the colors of caregiving are dark or somber. If they were we couldn’t do it. I treasured the bright blue moments of clarity whenever they appeared. Like the day he told me how he and his brother would roll up the carpets in the farmhouse kitchen, when they were young men living in Italy, in order to dance a tango with girls from the village. Was that a hint of pink pride on his face at the memory of holding a pretty woman in his arms? I basked in the bright yellow sunshine of joy when he gently held his newborn great granddaughter, Ava, for the first time, his eyes full of love for the tiny creature gazing up at him.

Yes, being a caregiver is a very colorful occupation. When Rodger passed away, once the worst of the grieving passed, I realized that the moments we shared, the good and the not so good, would forever be part of the richly colored tapestry of stories being woven by caregivers who tend to their loved ones every day and I am grateful to discover there are places like this where we can share them. What are the colors in your story?

Note: This post first appeared on The Caregiver Space in 2013 under the title, 50 Shades of Caregiving. I am honored to be a guest blogger for them in addition to writing here as The Imperect Caregiver. You can also find caregiver blog postsby me on AgingCare.com

 

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NaBloPoMo November 2014

 

 

 

NaBloPoMo – A Blog a Day in November

November is a big month for writers. It’s time for NaBloPoMo and NaNoWriMo – National Blog Posting Month where bloggers set a goal to write a post a day in November. For me that’s a big challenge. I try to post once a month but sometimes the days get away from me and it just doesn’t happen. I’m eager to see how this project works out and what effect it will have on my time management going forward.

NaBloPoMo was inspired by NaNoWriMo – National Novel Writing Month wherein writers are challenged to write a novel in the month of November.  This annual contest has resulted in many published novels and inspired thousands of writers to complete their work in progress even if they didn’t finish by the end of the month. I wish all the novel writers and bloggers starting this challenge good luck and good writing.

Here I go.

panic attack

The first time I had a panic attack I thought I was dying. I woke from a restless sleep with my heart racing and a heavy feeling in my chest. Then my fingers began to tingle and before long that sensation moved up my hand and into my arm.  At first confused and then terrified by what was happening I woke my husband. Call 911, something is very wrong! As I waited for the ambulance to arrive my heart raced faster and faster and each time the speed increased I became more frightened. Cold sweat poured out of me. I’m having a heart attack!

This can’t be happening. I have too much to do. I can’t do this to my family. How could my husband cope with the loss and care for his father? I was not ready to leave my grown children or my grandchildren.  I prayed for the ambulance to arrive in time while Mike paced.

“Your heart is fine, the EMT said after examining me thoroughly. What’s going on in your life that’s causing you so much stress? 

Caregivers know the answer to that.  Constant vigilance. Sleepless nights for days and weeks on end. Second guessing by family members who aren’t there every day like you are.  Loved ones who not only resist but openly fight your efforts to care for them. It all piles up and you take it all in. Swallow it down and start another day. Eventually something has to give and your body sends out an urgent signal. I’m in trouble here. And you are. Left untreated the same stress that leads to panic attacks can result in a heart attack. The good news is there is treatment. The key is to understand what is happening and why.

After that terrible scare I read all I could about what had happened to me. I quickly learned to recognize the onset of a panic attack. When I sensed one coming on I’d go to a quiet room, lie down and take slow deep breaths to calm myself. Over time it became easier and the attacks lessened in intensity and duration. Now they occur rarely and dissipate in minutes. I’m lucky. I can control my panic attacks without medication. For some the attacks are so severe and frequent medical intervention is needed. If that’s the case with you, don’t hesitate to consult your doctor and get treatment. You will feel so much better if you do.

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Is it a heart attack or a panic attack? (from HelpGuide.org)

Most of the symptoms of a panic attack are physical, and many times these symptoms are so severe that people think they’re having a heart attack. In fact, many people suffering from panic attacks make repeated trips to the doctor or the emergency room in an attempt to get treatment for what they believe is a life-threatening medical problem. While it’s important to rule out possible medical causes of symptoms such as chest pain, heart palpitations, or difficulty breathing, it’s often panic that is overlooked as a potential cause—not the other way around.

A panic attack is a sudden surge of overwhelming anxiety and fear. Your heart pounds and you can’t breathe. You may even feel like you’re dying or going crazy. Left untreated, panic attacks can lead to panic disorder and other problems. They may even cause you to withdraw from normal activities. But panic attacks can be cured and the sooner you seek help, the better. With treatment, you can reduce or eliminate the symptoms of panic and regain control of your life.

For more information about panic attacks and how to treat them go to http://www.helpguide.org/articles/anxiety/panic-attacks-and-panic-disorders.htm

To read more about Bobbi and her experience as a caregiver purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.

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NaBloPoMo November 2014

Halloween with Rodger

 

Halloween candy

“What time do the kids come?”

My father-in-law asked that same question every year on Halloween.

“Six o’clock.”

“Good. I eat at four. I’ll have time to get ready.”

I wondered what he did to get ready for when he did come down from his room at precisely 5:45 he looked no different than he had earlier in the day. He’d be wearing the same brown flannel shirt tucked into brown pants along with the black shoes and white sox he’d put on when he got up in the morning. He would have shaved that day so his grey stubble wasn’t as pronounced as the day before, but not because of the holiday. He shaved every three days and had for years. His hair would be slicked back as always and his face would hold the same dour expression that greeted me every day.

“I hope I don’t get too tired. I’m not as strong as I used to be.”

“You don’t have to give out the candy. I can do it,” I said.

“No. I have to. It’s my job,” he insisted.

“Why? I did it before you came to live here. I can do it now if you want to stay in your room.”

“I do it!” he snapped before moving a dining room chair close to the window and peering out to see if any young ghosts or witches were coming.

Seeing the street was still clear of trick-or-treaters he peered into the large wooden bowl full of candy and started to mumble.

“I hope this is enough. She didn’t buy enough. Oh no.”

“I have more. That’s all that will fit in the bowl for now. I can add more as we need it.”

“I can add more. It’s up to me. What time do the kids come?”

“Six o’clock. If you get tired before they stop coming let me know. I’ll pass out the rest.”

“I have to do it. I give them each one piece, right? What time do they come?”

“They should start coming at six o’clock. Give them more than one piece, we have plenty.”

“Two pieces. I give them each two pieces. What time do they stop coming? I hope I don’t get too tired. I’m not strong like I used to be.”

“You don’t have to do this. I can do it if it’s too much for you.”

“I told you, I have to do it. It’s my job”

“Why?”

“Because I’m the oldest and the oldest gives out the candy.”

I didn’t know what to say to that. In his mind that’s the way it should be. Every year, as long as he was able, I let it him pass out the candy. I kept an eye on him and when it was clear he was tiring I made sure the bowl emptied quickly, turned out the light and helped him back to his room. He always slept late in the morning and woke proud that once again he had done his job.

The kids still start coming around six o’clock and the big bowl still stands ready at precisely 5:45. There is plenty more to refresh the bowl at least three times. So many things remain the same. Something very important has changed. Now I’m the oldest and I give out the candy. I miss him.

To read more about Bobbi and Rodger purchase a copy of her book, Confessions of an Imperfect Caregiver. Blog followers receive a discount when ordering directly.

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There Really Are Angels Among Us

caregiving angels

When I first saw this picture I was reminded of a day when angels made their presence known to me. There had been an ice storm and Rodger was in the hospital again. Unable to get there so see him for a few days I was worried about him and how he would react upon seeing me. Although he often said he didn’t mind being in the hospital, he always resented it and acted out when he got home. I was becoming overwhelmed and prayed often asking God to send help. I prayed again as I drove the winding road over the mountain into West Virginia to the VA hospital.

The following is an excerpt from chapter 25 of  my book Confessions of an Imperfect Caregiver, the true story of my time as an imperfect caregiver.

“What did you say?” I asked, not sure I heard right.

“I asked if you need help. I understand that you’ve been caring for your father in your home for a long time and that his needs are extensive. Are you able to leave him to go to the store or go out to dinner with your husband? When was the last time you took an afternoon for yourself?”

“Um …” I stuttered. “Wow. Yes, I need help. Who are you again?” I wanted to ask him to turn around so I could check for wings, but I was afraid to appear cheeky to God.

“Here’s my card. My name is Rob Angelis, and I’m a social worker. I’d like to arrange some help for you…I can offer you in-home assistance if you’re willing to accept it.”

“Oh, I’m willing to accept it.Please tell me more about the program and when we can start.”

Yes, there are angels among us. Many are family caregivers. In the United States alone there are between 65 and 90 million family caregivers and the numbers grow every day.  Please do what you can to be supportive. The gift of time is precious to caregivers. A moment of respite is a godsend.  Be an angel and reach out to a caregiver.  Someone near you is praying for help.

Could I create a likeable, but realistic character who suffered from Alzheimer’s?

Anette Dashofy, author of the Zoe Chambers mystery series shares a bit of her caregiver story and how she created a very special character in her book, Lost Legacy, to honor her father. Welcome Annette.

Bobbi Carducci and I met and bonded many years ago in the hospitality suite of a Pennwriters Conference, commiserating about our roles as caregivers—she for her father-in-law and I for my dad. Sisters in the battle to maintain a real life while providing comfort for not-always-cooperative loved ones.

Of course, being writers, we both chose to share our emotions through the printed word. Her book is a lovely memoir. Mine, a work of fiction. Lost Legacy is the second in my Zoe Chambers mystery series.

This book has been a story of my heart, and as thrilled as I was to get the first one published, this one is special. Lost Legacy is dedicated to the memory of my dad, who—like Harry—Pete Adams’ father in the book, suffered from Alzheimer’s. Harry is NOT my dad. My dad’s illness was dark and ugly and complicated with strokes. Dad couldn’t walk without assistance, but didn’t remember, so he fell. Repeatedly. Loss of independence, combined with the ravaging effects on his mind, made him short-tempered and…well…just plain mean at times. He lost his ability to internally edit or use good judgment. He struck out verbally at those he most loved, reducing my mom to tears on more than one occasion.

Could I take such a hideous disease that reduced my strong, take-charge dad into a wheelchair-bound, helpless and angry man and write a fictional character who didn’t make the reader slam the book closed? Could I create a likeable, but realistic character who suffered from Alzheimer’s? There are a lot of readers out there with family members dealing with this or similar dementia ailments, and I knew they would call me out big time if I didn’t get it right.

But I really wanted to create this character of Harry. I’ve been the caregiver daughter who dreamed of running away. Like Pete, my own loving brother had difficulties watching our father deteriorate—though not as badly as Pete! As writers do, I took those relationships and magnified them. Played the what-if game.

Instead of focusing on the darkest parts of my dad’s illness, I used a lot of his more lovable quirks in creating Harry Adams. Spending time with Harry was like having a little bit of my dad around…the part I remember fondly. His addiction to chocolate milkshakes. The way he called everyone “Sunshine.” His mischievous grin.

I hope I succeeded in creating a real representation of an Alzheimer’s patient and the people around him. I think I did. So far my readers have given me thumbs up for the effort. Harry may have been the biggest challenge of my writing life (so far!), but he’s also become my favorite character. And the one I’m most proud of.

Also, I’m donating a portion of my royalties for Lost Legacy to the Alzheimer’s Association in honor of Dad…and of Harry.

Note: Although Annette was unaware of it when she named him, Harry shares his name with my father, the late Harry Simpson. It seems Annette and I are connected in ways that go beyond the love of writing and I am proud to know her.

 
http://www.annettedashofy.com/files/Home.html

 

The Four Walls of My Freedom – by Donna Thomson

I am proud to share the following information about this book for caregivers. The new paperback edition of the book, “The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving” (The House of Anansi Press, 2014) by Donna Thomson  is available in the USA at all major booksellers!

Donna said:

Here’s a short interview that aired a few months ago on a national morning TV show in Canada.   It will give you a sense of the book.  Here’s the link – sorry, I couldn’t find a way to embed it. http://canadaam.ctvnews.ca/video?clipId=315079&playlistId=1.1750084&binId=1.811572&playlistPageNum=1

DONNA THOMSON began her career as an actor, director and teacher. But in 1988, when her son Nicholas was born with severe disabilities, Donna embarked on her second career as a disability activist, author, consultant and writer.

In her book, “THE FOUR WALLS OF MY FREEDOM”, (2010 and coming out in paperback Jan. 2014 by House of Anansi Press), Donna examines her personal family experience with caregiving, probing the ethics and economics of how families giving and receiving care can flourish in society. Donna examines how social innovation leading to practical solutions for families can thrive even in times of austerity – a subject she blogs about regularly at her site “The Caregivers’ Living Room” (www.donnathomson.com). Donna also writes extensively for magazines on the topics of eldercare and family caregiving.

 

Why Does It Have to Be So Hard?

“I don’t get it. Why is so hard to do good work?”

“I don’t know, honey,” my husband said. The creases in the corners of his beautiful brown eyes deepened, indicating he was trying to think of something to say that might help me with my struggle to understand why offering loving care to his father was always met with such resistance. He didn’t come up with an answer that night and neither did I

For weeks I prayed and asked God that same question. Why does it have to be so hard?

I got my answer one Sunday morning. When the priest began to speak after reading the gospel, I felt that he was talking directly to me.

“I’ve been hearing the same question over and over lately. ‘Why is life so hard? Why is it so difficult to do good works?’ A chill ran through me. God had heard my cry.

“I’m here to tell you,” the priest lectured, “No one ever told you it was supposed to be easy. There are many examples in the Bible of people being tested to their very limits. It’s in adversity that you grow in spirit. It’s when you step up and do the hard stuff God asks of you that you earn your place in heaven. So quit whining and do what you know has to be done and remember you are not alone. He is there for you when you need Him.”

After that, when things got very hard I tried to make light of it by telling Mike, “I earned my place in heaven today.” He believed it, even when I didn’t.

At first I couldn’t take the words of the priest to heart. I wanted a better answer. But, as things went on and the more I repeated the words, “I earned my place in heaven today,” the more at peace I felt. I was not alone. God was with me and by doing the hard work I was earning the grace to make it possible. Not easy. But easier. What I thought in moments of weakness and exhaustion to be impossible became possible. Being a caregiver is not a job that we can do alone. We need help from our community, our family and our friends and in the moments when all of them are too busy or too far away there is one who is always there.

 “Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest.” Joshua 1:9

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